Bone Mets Thread
Comments
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Thanks for the kind words everyone. The med I'm on is called Femara in the US.
Fredntan - when my mom had chemo, her hairdresser recommended Nioxin shampoo (they have a very gentle formula for sensitive skin) to wash her hair and then her head after her hair fell out. She was also having whole head radiation, so had a double whammy going on. The hairdresser's daughter had Lymphoma and chemo and the Nioxin helped soothe her scalp. That said, check with your doctor first.0 -
the NP at my onco said use selsum blue. they do appear to be healing.
my puppy ate my lipgloss tonight and my daughters chickens back home died. not sure what happened. it was our first yr with chickens. hubgy built nice coop and run. i found really greatthrift store today !
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Curveball - In January 2010 I signed on to the Zometa trial but had to stop after 3 infusions because of jaw pain. I did end up with a bone met - but drs are not sure if it happened after my original dx or if it was always there (at the time of my original dx).
Today I saw the MO and he told me that my tumour markers are at the lowest they've ever been (CA 125 is now 8 & CA 15-3 is now 14) . He wasn't sure if it was the radiation or the AI knocking out the cancer cells but he told me to keep doing what I'm doing. So I'm going to continue taking the Anastrozole for another 6 months and hopefully the side effects will diminish. I see him again in March and we will re-evaluate. No scans until next summer.
Big hugs to those of you undergoing treatment or waiting for news and a happy dance for those of you who are just "coasting" now.
Marie
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I posted the question on another thread but thought I would ask here as well since it's related to bone mets. My mom saw the onc yesterday for her scan results and the bone scan has a bunch of spots lit up that weren't there a year ago and the report says "significant progression". The Ct scan however doesn't show anything except some deteriorating of the T10 which was not on her previous CT. Her lymph nodes are stable since last scan and there is nothing new otherwise. The oncologist said that bone mets are hard to track because imaging is not reliable for them and that he will continue to go by her symptoms, blood work, and lymph nodes and also monitor her CTs and MRIs for any changes in organs, nodes, etc. He said that because all else seems to be stable and she has no pain in the T10 that he will continue with her current treatment Aromasin. He said that the increase in uptake in the bone scan could be the result of zometa (which she was only on for a couple months and recently stopped because of severe SEs) because it causes activity in the bones that the bone scan will pick up. As for the T10, he believes that it could be osteoporosis, which would make sense given her age and the fact that since her original dx 12 years ago she has had 5 years Tamoxifen, 5+ years Femara, and almost a year on Aromasin.
Has anyone had what looked like significant progression on bone scan that was not actually progression?0 -
Happy holidays from a fellow Coaster, Marie! Great news for you!
Canadagirl - my first oncologist didn't do scans for just that reason - sometimes they give a false positive because things light up. The AI and Zometa I use apparently make things light up. My current MO said that he does believe in scans, but you have to have someone who can properly interpret them or you get false positives. I've been off Zometa since July because of jaw side effects, and had a bone scan in Sept. So apparently, it's not uncommon to have something look like significant progression, but it's actually because the bones are healing and the meds make things light up. I'd believe her MO; I'm guessing the "significant progression" reading was perhaps by someone who didn't look carefully at her previous scans or understand the meds she's on. Best of luck to you and to her!0 -
I have a question about "jaw" issues. I had 3 rounds of Zometa, then was switched to Xgeva. I have achiness in all my teeth for the past couple of months. Has anyone else had more generalized teeth and jaw achiness?
I had "tingly teeth" with my CIPN a few years ago - my hands and fingers have been permanently damaged, but my teeth got better - I could not tolerate chewing crunchy or chewy things for a long time. My CIPN recently flared up, not sure if it is due to the meds (letrozole, Afinitor, and Zometa/Xgeva), and wondered if the teeth thing might be related to the CIPN issues, or if it could be from the bone medications. Or maybe it is related to the general bone & joint pain from the letrozole. I also have a history of grinding my teeth at night, but don't use my mouth guard now as it seems dental appliances increase the risk of ONJ. Any ideas? All I know is I am uncomfortable.
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The results of my PETCT scan show that the arimidex isn't working. There's growth in the bone mets, and I now have lung mets. Oncologist still says I have many options....but will probably start chemo soon (find out definitely on the 17th. She mentioned doxil and taxol. Given that doxil can cause heart damage, I think I'd like to pass on that one.0 -
Patsback ... sorry to hear of your progresssion. For 18 months I was going through that, nothing worked. Femara failed after 18 mo, no response to Faslodex or Xeloda!! I was put on my first IV chemo 2 month ago - weekly taxol vs dose dense (higher dose with more side effects). My first scan after 6 infusions showed the beast was being knocked down!! So first response in over 18 mo!! Hang in there!
Linda ... I don't know what CIPN is, but I've been a grinder for years. I do use my appliance and it defin. makes a positive difference. I was on zometa and now xgeva for over a year. I will occasionally have radom pain, but if I wait a day or 2, it resolves. I'm a serious grinder and have been for years! Much stress in my life! Because my spine, in addition to other areas, is full of mets, the benefits far outweigh the risks of taking these meds. I have to do whatever I can to prevent a fracture of the vertebra, especially, which would seriously affect my quality of life.
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Thanks SyrMom! CIPN is chemotherapy induced peripheral neuropathy. I may go back to the mouth guard - my jaw is killing me today!! Sometimes I find that using it for a few nights will do the trick, so maybe intermittently would be fine.
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hi all..I will be leaving you all in a way as I have a new primary cancer now called small cell squamous extensive that is a large mass pressing into my spinal canal and has me about paralyzed from the waist down right now. It was operated on but returned in a few days even larger. Good news is this carboblaton seems
s to be shrinking it and I have a little more strength and feeling in my legs. Please keep me in prayers. My goal is to leave this nursing homeby next monday. I get my next chemo on the 17th I shaved my head today as hair wasfalling outin clumps,yuk.0 -
RangerMom,
I was just thinking about you, wondering how you've been. So sorry to hear about your new diagnosis, but glad to hear the chemo is helping. I hope the tumor continues to shrink so you can get your mobility back and get out of that nursing home. I'm sure you are ready for some family time and some snuggles with your new grandson. Keep your spirits up as you focus on your goal, and know that all of us here are backing you up all the way! Sending hugs and prayers your way!!!!!0 -
Hugs and prayers to you ranger mom. You sound like a wonderful woman. Hope you are up and around soon0 -
Rangermom, you have got my prayers. Your story is a little too close to home for me, and our grand baby isn't due for about 6 weeks. I have been asked to consider chemo . If you have time, I appreciate your prayers especially for family relations.
Thanks, Anita0 -
rangermom,
You all of my thoughts and prayers. I know you have a lot on your plate but if you feel well enough, please drop in every now and then to let us know how you are.
Much love, Caryn0 -
Praying for you Rangermom! I Hate this Disease...
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RangerMom,
You absolutely have my prayers!
I hope the chemo continues to work and you get to go home really soon.
Know that we're all thinking of you and watching out for news; so as and when it's possible let us know how you're doing.
Nicky0 -
RangerMom, I was very sad to read about your circumstances right now. I am glad to hear that the chemo is working and the tumor is shrinking. You will be in my thoughts and prayers.0 -
RangerMom (RangerGrandma), I am so sorry to hear you are having yet more crap dumped on your poor body! You are in my prayers and I will send extra special prayers for you. You know that you are more than your body - your mind and spirit and love and all those other qualities that make you the wonderful woman you are. Please focus on these attributes as the chemo does its work. With all the others here, I am hoping chemo does its work, even though it means losing your hair. May you be free from pain and fear, and know that you are loved.
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Hello, my name is Christy and I have been looking for a support forum for 2 years. I'm really hoping I have finally found it! I have extensive bone mets and I'm on monthly Faslodex and Xgeva treatments. I had no idea there were so many of us!! Anyway....Howdy from Marion, North Carolina!
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Rangermom! So sorry to hear the situation you're in, but I'm glad they have found something that works. I hope you are able to be home soon!
Christy, welcome. Be sure to check out the Faslodex thread. There are a lot of us here on that treatment. I've been doing Faslodex and Xgeva for 2 1/2 years, with good results so far.0 -
Rangermom, I'm so sorry to hear about this new cancer. I hope the chemo continues to shrink it and you can get back home soon.
Christy, welcome.
Leah0 -
Thank you for the welcomes, ladies! Sandilee, I will check out the Faslodex thread. I'm still trying to learn how to navigate on here but it seems quite user friendly! : ) Please add my prayers to Rangermom.
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Hi, Christy, and welcome. If you haven't already done so, check out the "Faslodex Girls" thread.0 -
Rangermom, so sorry about your new diagnosis. Know that I am praying for you that you will soon be home holding that new grandbaby.
Christy, you will find the best support you could hope for here. Praying for you too as I am all the ladies. Blessings, kathy0 -
rangermom, I am so sorry yo hear you have to have yet more chemo, sending a big hug your way and my prayers also for a miracle break in your treatment. Love your grandson, how exciting for you, and praying much more time with him.
This is my first time on this thread. I had a ct scan a few weeks ago after completing abraxane ( very tolerable except for hair loss) and being on afinitor/aromasin for 3 months. Mixed bag as bone mets were stable and cancerous nodes around lungs have gone but lung has filled with some muck they are not sure about and nails deteriorating. Tumor markers rising rapidly so have been taken off affinitor and having another ct next week to see if they have missed progression. I believe it's the afinitor that had caused these issues but he doesn't. I had Zometa infusion on Thursday and have been in bed since with terrible rib pain and shortness of breath, so I hope all will be well love Gail0 -
So sorry Rangermom for the news. Wish I could provide more help but I will send hugs your way.
Welcome Christy, sorry you have to be here but this is a fantastic site. Not only will you find much needed support, but you will also find a huge amount of helpful information that can't be obtained anywhere else. It gives us a place to cry, vent, scream, comfort people going through a similar experience. Most of our loved ones support us the best that they can but they can't truly understand. We also don't like to burden them with out fears and tears. I try to be strong for them...here I can be the basket case that I often feel like. If you have any questions, you will most likely find answers here because at some point someone here probably has been there.0 -
Rangermom, Sorry to hear of your new diagnosis, Prayers are going up like crazy from this site and here, I know you don't know me, but I have been following this site for a while and find great comfort here. I hope you get some too.
Redroan0 -
Rangermom, rest assured you will be included in my nightly prayers. Remember that we are here for you, and holding your hand. Soon, you will be home able to hold that precious grandson of yours.
Tight hugs from all of us and please do stop in when you're feeling a little bit better.0 -
aaoaao, Thank you and the other ladies for the welcome. It's true that even our beloved friends and family don't really "get us". I have been searching for a while for a forum so I could maybe scream when I want to and also to help those sicker than me with my support and prayers. Gail, I will be praying for you! So sorry you are having a hard time. Oh and I might add.....I HATE CANCER!!!!!! Whew! That felt really good!!!! Love and light to all!!!!! Christy
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Hi All, I was originally diagnosed stage 3 BC in
October 2011. I was 33. Since then I've had bilateral masectomy, chemo, radiation and in may of this year I had lattismus flap reconstruction. I had been on tamoxifen for a year and a half. I was feeling great after recouping from flap surgery. Then I started getting extreme shoulder pain. Thinking it was from the flap surgery, I consulted my P.S., he sent me to P.T. That helped for a little while. Then I started getting what I thought was sciatica pain down my leg. Consulted my pcp who said to get a full blood work up. Even though I had just gotten my normal 3 month blood work from my onc. Pcp called a week later and said my alkaline levels were very high. And she suggested a bone scan. My oncologist seemed to be very surprised. Said my levels had always been a little high but consented to bone scan anyway. Sure enough, I now am stage 4 with bone mets. Many bone mets. Femurs, spine, pelvis, shoulders, ribs. How did this happen in just a few weeks time?I am now getting Xgeva and Zolmeda monthly. And am having a rod put in my r femur to prevent fracture in January. I am almost pain free due to fentanyl patch. But am still having some breakthrough pain in hips and legs. I thought my initial diagnosis was tough but I've now realized, I'm going to die from cancer. No one can tell me how long I have. But I'd love to hear from some of you on how long you've been living with this horrible disease. Thank you. Danie
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